Narcolepsy, excessive daytime sleepiness, etc.: Aside from medication, how do you deal?

The question pretty much sums it up.

I suffer from post-traumatic sleep disturbances. Post-traumatic meaning this began after sustaining head trauma. (Last fall I got into a car accident and broke C1-C7, had a brain hemorrhage, & some neurological impairments which have since improved.)

I am currently receiving medical treatment & I know YANMD. I'd just like to hear what other remedies, aside from medication, people take to combat excessive sleepiness. I already take 4 medications that are either stimulants or have stimulant-like properties: Wellbutrin SR, Adderall, Ritalin, & Nuvagil.

This is not enough. I'm going in for a sleep study in a week to determine what exactly is going on with my sleep cycle. Endocrinology stuff has yet to be ruled out, but right now all of my doctors believe this is related to my past head trauma. According to the literature, this is not uncommon.

Basically, I suffer from sleep attacks at random, unpredictable times. One minute I will be perfectly fine, the next I'm holding my eyelids open with my fingers. I've already fallen asleep at work on multiple occassions, this last time resulting in me falling to the ground. I fall asleep sitting up in hard chairs. I'm taking continuing education classes, half of which I've missed so far because I fall asleep. I'm also trying to study for a grad school entrance exam in October... which I likely won't be taking if this continues because physically, it just isn't possible.

Napping when the sleep attacks come (assuming that would be possible-- I work 9-5) does not cure the sleepiness. When I wake up, I may feel okay, but the sleepiness will eventually come back. The attacks last from 2 hours to multiple hours. After it passes, I will be fine, as if I was never tired in the first place. For example, sometimes this will happen at 10 a.m., and then by 2 p.m. it will pass, and I'll feel well-rested and energetic like I would be after a full night's sleep.

I get enough sleep. Not too much, not too little. My whole life, my body has been good with 6-8 hours of sleep a night. Right now I'm sleeping 7-8 hours a night, and it's not working for me apparently. I wake up to my alarm feeling well-rested after the normal first few minutes of ugh15moreminutesplease.

Right now the only things that are helping are the meds. I cannot function without them. Unfortunately, they're also short-acting and make me feel like shit when I'm coming down.

I'm wondering what else I can do to stay awake. Caffeine doesn't affect me. At work, I try to take walks when I start to feel an attack coming on, but within 10 minutes of returning to my desk, I'm back to nodding off. Eating small snacks like pretzels helps, but again, only temporarily. I can't exercise because of an unresolved neck fracture. Exposure to sunlight helps. Should I get one of those light boxes for people with SAD? Would smoking help? (Terrible, I know, but I'm desperate.)

I'm scared of falling asleep while commuting and I'd really like to take this test I've been preparing for in October. I just need something -- anything! -- as a supplement to the meds. I'm willing to give anything a shot, no matter how crazy or weird it sounds.

I can't offer much in the way of advice, but I wanted to chime in on this point. Are you driving? If so, you really, really, really, really, really need to stop until your condition is stabilized and you have the OK to drive from your doctor. In many states, your doctor is supposed to report you to the DMV, but in any event, falling asleep randomly and unpredictably is extremely dangerous if you're behind the wheel of a car.

If you're not driving and this refers to falling asleep on the subway or whatnot, nevermind, but I feel it had to be said. In any event, good luck and I hope you get some relief soon!posted by zachlipton at 11:28 AM on August 15, 2010 [4 favorites]

I'm a very sleepy person (well-investigated, nothing apparently underlying), and a big thing for me is temperature - warm me up and I get far more sleepy. So if you can be in a cool draft (from outdoors or aircon, doesn't matter) that might help.

Another temporary solution is sour sweets - probably last about as long as the pretzels, but at least you get some variety.

IANAD, but both ritalin and adderall come in sustained-release formats - would these help in your comedowns?

The obvious solution to the falling asleep on commute problem is to have a commute-buddy who makes sure that you don't sleep through your stop (assuming that you're not driving - as zachlipton says, there is no way you should be in charge of a car right now). Is there anybody you work with who takes the same route? Or if this is possibly something you could get a personal assistant from social services with, contact your local brain injury charities to see if they can advise on the best way to ask.posted by Coobeastie at 12:06 PM on August 15, 2010

Stay hydrated, and chew lots of wintergreen or peppermint gum. I keep long, erratic hours, and can't remember the last time I got "enough" sleep, but with a big bottle of water and a pack of strongly minted gum, I'm unstoppable.posted by honeybee413 at 12:44 PM on August 15, 2010

My father has had quite severe narcolepsy since he was in his early twenties (he is now in his early seventies). The solution for him was heavy-duty medication and under medical supervision this worked for him. He managed to hold down a full time job for decades.

Later in life he managed his condition with less medication, working fewer hours, and taking more day time nap breaks. I feel this was better for him.

You may not be in this situation, and it may not be a long term condition, and I wish you the best. But what I am saying is that medical management can help a person to cope with even quite severe narcolepsy, and allow a person to live a long life, doing the things they want to do. I know it can be OK for you.posted by communicator at 12:54 PM on August 15, 2010

This may be a dumb question, but is there any reason why you can't get more sleep at night?

It might be worthwhile to check your diet. For example, I used to get incredibly drowsy after meals, and after keeping a food journal, I eventually connected it with wheat gluten. I cut out wheat gluten, and the drowsiness stopped. Amazing! Also, make sure you're eating enough for breakfast (including protein) and remaining hydrated throughout the day. When I get oddly sleepy during the day, it often means I'm dehydrated. I don't feel thirsty, just sleepy. Very strange. I realize that these things might be a stretch as your symptoms didn't show up until after the head trauma, but it's worth a shot at any rate.posted by granted at 12:59 PM on August 15, 2010

Eating small snacks like pretzels helps, but again, only temporarily.

This speaks volumes to me. IANAD, nor have I had head trauma to the degree you describe. However, some years ago I went through a similar cycle of falling asleep randomly at work and in school. I was prescribed Provigil at one point, which didn't do a thing. Eventually I got a correct diagnosis, but it took years.

In my case, the cause was insulin resistance, which often presents as hypoglycemia before turning into full-on T2 diabetes. My blood sugar was crashing so low that I was essentially losing consciousness.

Rather than treat it with meds, I opted for dietary changes. Long story short, this meant no junk food, no sugar, no grain products - complete and total avoidance of simple carbs. Problem solved.

So your comment about the pretzels - which are a highly processed food - makes me think you may have endocrine issues going on also. Typically, simple carbs like pretzels and other snack foods cause a rise in blood sugar - "helps" you stay awake - followed by a surge of insulin. In someone with IR, too much insulin is released, causing a crash in blood sugar, which leads to sleepiness and sluggishness.posted by chez shoes at 1:34 PM on August 15, 2010

IANAD. IANAN. I should not be mistaken for one.

That being said, well...my supervisor did some fundamental work on the sleep-wake cycle and the reticular activating system, and the OP seems to be reporting something well beyond the norm. So suggestions about hydration and such are excellent in a general 'take care of your overall health' way, but this is so far out of the realm of home intervention. And good SAD lights are very expensive--if this isn't a problem that will be genuinely helped by the light, you'd be shelling out a few hundred dollars for a placebo.

And I beg the OP to stop driving until this is resolved. It is awful and sucks. I have been there. It's embarrassing and limiting, especially in the US outside of the East Coast. But you seem to have a fundamental disruption of sleep that is not wholly resolved or managed. You are risking multiple lives when you get behind the wheel.

You need that sleep study before anything else, and before anyone can give you more than wild guesses at what might help. Depending on what kind of disruption is occurring, there will be different management strategies. There are many routes to narcolepsy or sudden sleep attacks: circadian disruption which can be caused by various things, damage to sleep centers in the medulla, etc.

On the plus side--I've known successful graduate students with narcolepsy. But I'm looking at your schedule and self-pressure and I recommend that you take care of yourself and be gentle and patient with your body. You are less than a year out of a TBI. Less than a year, with an unhealed neck fx. It sucks to be patient. It really sucks. But if you push yourself too much right now you will not improve faster--you'll only be frustrated. I understand the feeling that time has been stolen from you and you have to make it up and come back all the way right-now-this-year-catch-up-must-catch-up.

What it took me years to learn is that when you push too hard too soon--and it seems you are right now--you are stealing your own time as well. I'm not being cavalier or dismissive.posted by Uniformitarianism Now! at 1:34 PM on August 15, 2010

Before I was diagnosed with type II diabetes, I could not stay awake in a low light situation: is there a chance that you could be one too?posted by francesca too at 2:27 PM on August 15, 2010

Thanks for the help so far, guys. I appreciate it.

the OP seems to be reporting something well beyond the norm. So suggestions about hydration and such are excellent in a general 'take care of your overall health' way, but this is so far out of the realm of home intervention.

Yeah, I figured someone would bring this up. I realize my problem isn't an easily resolvable one short of strict medical treatment, but I guess the naive part of me wants to think there is something else out there -- something I haven't thought of -- that I can do to stay awake.

To answer some questions, I do in fact drive. Aside from putting the lives of others at risk, everyday I remember that physically I can't afford to get into another car accident. My neck is still too fragile. Sudden stops will throw me off for the rest of the day.

Up until yesterday I lived 6 minutes from my workplace, so I was hardly ever driving. (When I'm not working, I'm with my SO who will obviously not sit in a car with me when I'm driving, so I always had him.) Anytime I had to drive relatively long distances (20-30 min, very rarely), I would take Adderall or Ritalin. When those are actively working, I'm great-- awake, attentive, etc. I don't experience any degree of sleepiness. The problem is that they're short-lived and highly addictive, so I can't be "on" them at all hours of the day.

Yesterday I moved, so I now live 40 min from my workplace. That's my concern. Fortunately, one of my close coworkers lives nearby and he has offered to drive me to and from work. I also spend Friday through Monday a.m. with my BF which eliminates any driving during that time. (He also lives 6-7 min from my workplace).

I should also clarify that when the sleep attacks happen, I do have some notification of them. They are unpredictable, but there's usually 10-15 min lapse between noticing I'm suddenly tired and getting to that point where I physically can't resist closing my eyes. This is where I get up and go for a walk or get out a snack if I'm at work. I fall asleep when I try to resist it for too long or just give in. So if the sleepiness were to ever happen while I'm driving, I now know I have to pull over. (I purposely don't take the expressway, so I can make immediate stops.)

I suppose mentioning narcolepsy in my question was misleading because although it hasn't been ruled out, it's not the case that I will abruptly fall asleep in the middle of a conversation. I figured any narcoleptics here would have some helpful tips.

Re: insulin: It's been tested in the past (May was the last time) and my fasting blood glucose levels haven't been out of the normal range. I'm also having standard bloodwork done when I go in for the endocrinology tests next week. I definitely try to take advantage of the rise in blood sugar when eating. That's the only reason I've started snacking. It helps. Temporarily, but it helps.posted by overyourhead at 2:35 PM on August 15, 2010

I'm glad you're being proactive about the driving. :)

What you're describing sounds to this untrained, non-clinician's ear more similar to actual narcoleptic sleep attacks (which is more likely to be 'sleepy NOW NOW NOW gotta sleep gotta sleep' than 'instant asleep') than the popular portrayal of sleep attacks in narcolepsy. I'm not saying you have narcolepsy--I'm saying what you describe, if accurate, would not be inconsistent with the condition as I understand it. However, lots of other causes, issues, can cause EDS.

Adderall and Ritalin are not highly addictive for everyone, though they may be for you. I certainly have mild physical withdrawal from Adderall, but I'm not 'addicted' or 'craving' it the way I used to crave coffee. If you feel that you do have addictive tendencies/cravings with regard to these substances, please bring it up with your neurologist as a concern, especially once your endocrine panel and sleep study are finished, because then s/he may be able to make more focused recommendations for alternatives.

There are non-stimulant drug options in EDS treatment, but despite being a lay person, I know that they clash with other medications you're taking, so again, if you have concerns about stimulants, please make sure your doctors know. Scheduled naps may help, but those are hard if you're on extended-release stimulants.posted by Uniformitarianism Now! at 3:36 PM on August 15, 2010

Here's the problem with your medication regimen: three of your four meds share the same targets (DAT and NET). That means they are competing with each other; i.e., each drug is less effective in combination than it would be by itself. Furthermore, the drug that dominates in terms of effect will have more to do with binding kinetics than potency, which means that the weaker drug(s) may be blocking the stronger drug(s), and rendering them less effective.

In particular, it makes no sense to be on both adderall and ritalin, as they are mechanistically identical. I suggest dropping the latter (it's less efficacious than adderall and has a shorter half-life). Wellbutrin is different enough in character that I could see the justification for keeping it, though again, it will probably make adderall less effective and vice versa. Nuvigil is a weird atypical and is perfect for your purposes. Keep your wellbutrin and nuvigil doses high, as they produce little in the way of tolerance, dependence, and crash. Use adderall sparingly, because it will lose effectiveness over time.

Smoking will not help, but if you do want to try this route, use nicotine gum/lozenges and not cigarettes, for the sake of your health.

I'm also going to throw out two oddball suggestions. One, for sudden sleep attacks, try using an OTC epinephrine inhaler (e.g., Primatene Mist). Any benefit would be short-lived, but might help in keeping you awake temporarily.

Two, look into neurofeedback. It's still somewhat controversial in terms of efficacy, but has shown usefulness for other conditions. If you're showing an overabundance of e.g. delta brainwaves, which are associated with slow-wave sleep, you may be able to train yourself out of it by working on boosting alpha or beta. If you pursue this route though, find a qualified doctor with real training and equipment, not the toys and quackery you find online.posted by dephlogisticated at 11:00 AM on August 18, 2010

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